I'm hoping someone could help me. For the past year I have noticed a change in my bowel movements, they are no longer solid. They are either mush or diareah. I also get cramping, gassy, bloated at times after I eat. Not all the time, but more often then not.
My b12 level is low 161 and I have to go for monthly injections. My ferritin level is also in the low range 13 ug/l. I have chronic hair loss and tingling in my hands and feet.
A side note, latest ultrasound showed that my spleen was enlarged. I am at a loss as to what is going on.
No, not yet. I go see the gastro specialist on Monday. I wanted to get some feedback from members of the forum to see what they thought. The sad thing is this has been going on for so long (low iron and b12) and my primary doctor has done nothing accept give injections and not investigate further.
Thank you for your reply, I will keep you updated.
It sounds like your primary doctor is applying a band-aid to the problem. This is so common with conventional medicine. I would see about a referral to a gastroenterologist. As it sounds like you already know, B12 deficiency is quite common to people with chronic conditions such as Celiac. Not always with milder cases of Celiac, but chronic diarrhea isn't mild and will cause deficiencies. Untreated Celiac causes malabsorption, thus the deficiencies. Many Celiac patients are also at a higher risk of developing RA and/or Osteoporosis. Doing nothing but the band-aid approach will not solve the problem. B12 shots, though essential right now, just aren't enough by themselves, as you obviously well know. If you test negative with the blood test, which many who have Celiac do, you will have to insist on other tests. The small intestine biopsy can help--if they'll even do that. I keep hearing that the fecal test is best. Perhaps my post will prod someone else who knows more will add more input to my comment. Many battle for years to get an official diagnosis while still more and more damage is done because of the body's inability to deal with gluten.
Thank you very much Furballsmom for your reply. I will let you know what happens tomorrow, this is when I am actually going to see the gastroenterologist. It only took 3 months for the appointment ( that is a whole other thing lol ) . I will insist that they do test for this. Your feedback is very much appreciated :)
Just wanted to give an update. Just got back from gastro doctor and she seems to think I might have crone's desease/colitis. I go on Feburary 17th for the test where they go up your anus and down your throat, they will also take biopsy's. Sorry, I can't remember the name of the procedure. Hopefully doing this they will figure out what is going on.
It sounds like your diet will still continue to play a very important role in preventing major flare ups. I would recommend a gluten free and dairy free diet just the same, because Crohn's is still an autoimmune issue. Gluten is a bigger health threat than many doctors are willing to recognize. The wheat we have today is nothing like what was eaten back in bible times. Many old timers often say that they don't think wheat is the same as it was back when they were very young. That's because it isn't.
Hi Furballsmom, you are so right. Just look at how many children have food allergies, it's very scary. Either way, I just hope they can figure out what is going on and hopefully this upcoming test will do that. Do you know if they can tell right away by looking or is it something they can only tell by the biopsy?
Often, the Sprue test is simply not sufficient to determine if one has Celiac. I'm sure you can have Celiac at the same time as Chron's disease. I would encourage you to join the Celiac community. There are other tests. I am unable to get anyone to do the biopsy for me, but I've also heard that it's often a false negative even with the biopsy. The fecal test will sometimes help. I've been told I will need to do the genetic testing. I will need money I don't have to do that, because insurance companies don't like to pay for that one. A positive diagnosis will help you a lot if you're ever in a hospital setting, because they can't get away with treating you like you're nuts just because their fancy shmancy blood test is negative and that's as far as they're willing to go with it.
That's right, as much as gluten negatively affects people who don't have Celiac or aren't sure if they do, if the blood test comes back negative but you still have symptoms--it's all in your head.
Don't let anyone get away with dismissing you or disrespecting you if the blood test is negative but you still want to try going gluten free to see if it will make a difference. I'm fortunate that my brother's family has all gone gluten free because they all tested positive for varying amounts of gluten intolerance and one of them has Celiac. I say fortunate, because at least I have family members who don't pick on me about needing to be gluten free.
Doctors fail to understand that other parts of the body are affected by gluten intolerance and not just the colon. Going gluten free and dairy free has helped me immensely with the eczema alone. The steroid ointment wasn't really helping me. The primary doctor has seen the eczema blisters and when I told her that going gluten free is what made them stop flaring up, since she has seen the outward evidence with the eczema flareups on my hands, she believes me. That much should be sufficient evidence for hospital staff at the local hospital that I really am gluten intolerant, even if the blood test is negative. It's most likely that I am gluten intolerant but not Celiac. Nevertheless, I still need to eat like I am a Celiac and live like I am a Celiac.
I tell you this part of my story, so you will understand why it is important to consider going gluten free even if the blood tests are negative. And, to understand that it can be a struggle to get a positive diagnosis. You can test negative and still have the illness.
I read a woman's personal story about how she went for years not knowing what was wrong with her. She struggled as a young person being unable to leave the house for very similar reasons as someone with Chron's who is having the symptoms you are having. She had no clue that she might have Celiac. Somehow she got information that she might want to investigate whether she had Celiac or not. Every test she took was negative. However, since she had every test done under the sun and other illnesses were ruled out, the doctors did finally say that she was a case that had to be Celiac. Since going gluten free and Casein free (the protein in dairy that has a cross reaction to the gluten in the grains that contain gluten) her symptoms improved. After a life time of continuing to damage the intestines because of being unaware of having Celiac, she still has days when she can't leave the house. But, she actually does have more good days than not and finally has the freedom she needs to leave the house.
Thank you again for your wealth of information. I will definitely remove all gluten from my diet. I will wait until after my test though, just incase they do test for that, I want to make sure they can see it. Acutally, I will MAKE SURE they do test for that. Since they are doing the biopsy's they should see something. I will keep you posted on what I find out.
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